I had a checkup today, as I have chemo on Friday (it's bi-weekly) so it's routine. The last couple of times I've gone it's involved waiting around for over an hour, going in, him asking if I'm ok, me going yes, and him going "super, off you go".

Anyway LAST time he said to me that my scan results had come out very positively, everything was going swimmingly, and I'd be finished very soon (or maybe even sooner than anticipated).

So my dad and I went along today (he comes to the hospital each time with me, I think he likes the time off work) with the expectation of either non-news or good news.

He starts off with this little icebreaker:

"Well how much have you read about your type of lympoma?"

"Not much - there isn't much on it as it's quite rare - that's about all I could find on it"

"Right... well there's a 40% survival rate for the 5 years after treatment"

"You mean 40% survival rate of the cancer?"

"No... of the patient"

Then he immediately changes the subject while I'm pretty much reeling from the news that only FOUR IN TEN PEOPLE SURVIVE THE FIRST FIVE YEARS. Thanks Doc!

After I digest this and blink back these tears that have somehow appeared in my eyes, he goes on to then say that it's difficult to say what will happen as it's so rare, so there isn't much documentation.

He then goes onto say that after my chemo, I won't be able to just go home. I'll probably have to come back into hospital for 2-4 weeks to have a transplant.

Now for some reason he keeps reassuring me that the transplant is perfectly safe, even though I hadn't looked worried or said anything. This immediately GETS me worried and raising my eyebrow.

Oh - another little gem of news - there's a 5% mortality rate for the transplant they want to give me! But I get to choose if I get it. Basically if I don't there's a good chance the cancer will come back (relapse).

So my situation has gone from him saying 2 weeks ago "everything is peachy, this PET scan is better than we hoped for, you'll be done in 6 weeks max" onto "well you might be ok by 6 weeks but even then the chances of relapse are high so we want to give you a stem cell transplant".

Now the thing is - nothing has actually changed. I knew I'd be having 3 more chemos. I knew that I'd probably have to continue with some form of treatment after. That's fine.

It was the way he pitched it. He launched in with the 60% mortality rate figure (which, to be honest, I didn't need to know until they were trying to convince me the transplant is a good idea) and the 5% mortality rate figure, and then told me the good news. Which is completely the wrong way to do it.

It was only after on the train, when I was processing the information, that I realised this. When you're in a doctor's surgery and he's throwing these horrible figures at you (let's face it, 40% is the wrong side of half the population) you aren't going to be listening much after that.

I just wish the NHS would spend a little bit of money training doctors in how to speak to patients. Even as a teacher I know from parents evenings that you cushion them first with some good news before launching in with the worst news imaginable.

So I was a bit cut up about it. I'm ok now - I figured 40% over an entirety of people with my type of lymphoma, over a timespan as large as 5 years, isn't as bad as it initially sounds (thanks doctor!). If you split it down, it could be 20% mortality in the first year, then 10% for each subsequent year. And this also takes into account old people, unfit people, unhealthy people. Etc. So I was a bit upset (and slightly tearful, but was in front of my dad and a bunch of commuters, so had to be manly!) but now I'm ok.

Sorry that this is long and not very interesting for some of you, but I don't have a blog and I needed to get it off my chest. I don't really expect many replies so cheers for letting me vent on here.

__________________"There is no I in team, but there are two in anal fisting"

wtf? they seem to have neglected telling you about a large amount of your ****ing treatment.
That really sucks. I'm sure you'll be fine though, really fit and stuff. Do your school + kids know everything? or just that you're "ill"?

[I bet someone was going to ask who gets the psp if you die, but it wouldn't really be that funny ]

So I was a bit cut up about it. I'm ok now - I figured 40% over an entirety of people with my type of lymphoma, over a timespan as large as 5 years, isn't as bad as it initially sounds (thanks doctor!). If you split it down, it could be 20% mortality in the first year, then 10% for each subsequent year. And this also takes into account old people, unfit people, unhealthy people. Etc. So I was a bit upset (and slightly tearful, but was in front of my dad and a bunch of commuters, so had to be manly!) but now I'm ok.

It might be an idea to get in touch with the doctor and find out what research/clinical papers etc there are that you could look at relating to your cancer. The 40% survuval rate might be people who are still alive after 5 years period. The figures might not take out people who died of car crashes etc. If i were you i'd want to know my chance of survival as close as possible (although it doesn't really matter ... you will be fine ... i'm sure of it).

Also, STAY POSITIVE! Maintaining a healthy attitide towards the illness will help you (apparantly ... i believe it will anyway). Plan for the future. Try not to get depressed. And laugh alot (giggle like a little school girl).

This shit better not **** up drinking in Glasgow in September!!!

__________________
On a long enough timeline, the survival rate for everyone drops to zero.

Obviously what is needed for doctors is a "Yahwe explains: Bedside Manner" thread which could then be copied and sent to every doctor in the world.

Another thing to consider is that doctors often exaggerate the negative side so as to prepare patients for the worst and especially if they are talking surgery it helps protect them from law suits later where patients say, "but you said there was nothing to worry about, that it was a snap procedure but now my testicles are missing."

Found out last night my mum wants to organise a "family holiday" in the first week of September, which is the same time as my mates going up to Glasgow

But!

Looks like I'll be having more time off work etc, seeing as I get paid for the summer holidays and won't be spending much of it. So I might just come up on my own when this is all over.

Oh yeah - I was thinking more about this 40% thing (and asked my dad). We've realised that this figure is pretty ridiculous (and wondering why he even told us it actually):
1. He gave that figure then gave no comparisons to it (ie: this is what it is if you DIDNT have the treatment, but if you DO it becomes xx %), which makes it pretty pointless.
2. He didn't tell us how many people this is for. And based on how rare my lymphoma is (extremely) I wouldn't be surprised if it was less than 100 people. Which isn't really a significant number.
3. He didn't tell us how long this 40% figure has been put for. I mean it could just be over the last 10 years, or it could be from the last 20-30 years. In which case of course mortality is high, as lymphoma treatments have taken leaps and bounds in the last 10 years.

Also I don't know if I made it clear in my first post. I haven't definitely got a 40% survival rate. That's if the cancer comes back in the next 5 years. It might not come back at all, if I'm lucky. It's based on a whole host of things.

He told me that figure because he said that they're probably going to recommend the surgery treatment, which would reduce the chance of the cancer coming back (and therefore INCREASE the figure from 40%).

I'm being as unclear as the doctor was

__________________"There is no I in team, but there are two in anal fisting"